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Lean On Me

December 3, 2017

There’s a lot of nonsense written about “independence”. My last blog post, “An Engagement Announcement” was turned by some into a discussion on independence, although reading the post back, I never used the word once. I wrote about my death plan and imagining Steven’s future when I’m no longer around but it was seized upon as an opportunity to espouse about the importance for a learning disabled person to become independent. Of their family.

I’m going to try and not make any assumptions about what independence means and looks like for other families but I can talk about what it looks like in mine.

I remember the shock during the first meeting with the “transition manager” when Steven was 17 when she pushed me to give her a timescale to when we saw Steven living independently. It was my first encounter with the trickiness of what that word really means. Naively, I equated it to what it meant to me when I left home at 19. For me it meant having to learn to cook for myself, pay my bills and consider things that had never occurred to me before – like it’s important to clean the grill pan every now and then.  I saw less of my family but it didn’t mean that I became emotionally divorced from them. At times of trouble, I would still pop back home to be welcomed by my Dad serving up a cold meat pie.

The framing of the transition manager’s question (as she repeatedly explained) was to prepare Steven for a time when I die. Once again, I found this a tricky concept. When he was 17, I was 48. I was in good health. My Mum died when she was 42, so I was acutely aware that there is no set age for dying. I remember that strange feeling when I hit 43 and realised that I had outlived her. But I felt then (when Steven was 17) the same as I feel now – it is impossible to prepare for life after the death of someone you care very much for. And why should you? You’d have to emotionally detach yourself and run the risk of missing out of lots of good stuff between the detachment and their eventual demise.

Our life has changed a lot in the last year. From being around practically all the time, I now spend the weekend with Steven and see him for a few hours on Tuesdays and Thursdays. He looks upon the weekends as me “coming for a sleepover”. It’s interesting that he’s been drilled in service speak and uses the term “sleepover”. I wonder how many non disabled people planning to host family members over Christmas are viewing that as a sleepover.

As I’ve been at Steven’s since yesterday morning, I’ve been thinking about the “independence” question and reflecting on how it fits into the way the weekend has gone. Yesterday, Steven approached the support worker (and not me) and asked him to cook Steven his chicken pie. A year ago he may have asked me. Is that more independent? This morning, he called out for the support worker to do his shower. There’s nothing new there. I can’t remember the last time I supervised the showering. Is that more independent? As I typed the first paragraph of this post, Steven called me into the living room. He wanted to ask why there aren’t any archipelagos in Cowley. I don’t think he would have asked the support worker that question, whether I was here or not. Is that unhealthily dependent? Steven is about to go to the shop to get his Frazzles. He won’t ask me to come. Is that more independent? This afternoon he is planning a Christmas compilation tape. He fully expects me to take charge of that. The full list of Christmas songs is in Section 9(A) of the Death Plan so he could ask the support worker to do the tape but I expect he’ll want to discuss with me who Jonah Louie resembles from his old school (Answer – John, the minibus driver). After the tape, Steven wants to watch his The Beautiful South on Jools Holland Video. For that 90 minutes, he will send both me and Francis to our rooms. He likes to conduct his viewing on his own, giving his own unique running commentary in his own space and time. Is that more independent?

Most of my writing and the thoughts I have to gauge my sense of my world tends to focus on the “small places”. I hardly ever think about independence for me or for Steven. I know that I am just as connected to my Dad as I was when he died 25 years ago. Possibly more so. This morning, Steven chose as his photo of the day, one taken from the school when he lived with his foster family. He hasn’t seen any of those people for 22 years but they still mean something to him. For me, that goes way beyond independence and having the capacity to cook some sausages and spaghetti hoops in a microwave.

The Beautiful South video includes a few guest performances. The show concludes with Sam Moore joining the band for an uplifting version of “Lean On Me”.

We all lean. It’s healthy and important.

Why should it be so different for a learning disabled person?

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12 Comments
  1. A learning disabled person (and I hate that label as it doesn’t define the person) needs to lean on those who love them more, much more. They are so vulnerable.
    And why does anyone think they don’t need to lean on family? How stupid or inhuman, or what trick is it?

  2. Pauline Thomas permalink

    A brilliant insight into ‘independence’ and what it means to you and Steven.

    My son still lives with us (his parents) at home. Although our lives are so geared round his needs that we often joke that we live with him. Does living independently mean living entirely on your own? If so then my son will never be ‘independent’ He will always need someone to help him live the life he chooses. That is if he ever gets the opportunity to live the life he wants when he no longer lives with us. LIving the life that you choose to live is real independence, even if the home you live in is shared with other people.

  3. emily permalink

    Beautiful post. Max is now 8 and I am 46. It eats me up everyday how he will cope once we are gone. He has a sister who is 9 but what’s to say that she will want to keep an eye on him…we can only hope that she will. Instill as much Independence and hope for the best. It’s all we can do

  4. judyb permalink

    Families depend on each other in every way. It is normal and natural. Why does the State not understand this?

  5. Instead of nurturing the family unit, the authorities behave in an obstructive and domineering way towards family members involvement with their child once they reach chronological adulthood. They cause destructiion of relationships by exacerbating stress levels and scrutinize, covertly and directly try to control and do their best to sever family ties with their child, especially if they lack mental capacity. They dehumanize the incapacitated, take away their rights as human beings and show a lack of respect for their feelings and choices. God Save them from their arrogance and ignorance which destroys people’s lives and causes perpetual suffering for families and their loved ones. Independence is not one size fits all.

    • Yes, that’s been true for me too for years, only until this year when I’m suddenly being supported in a way I thought wouldn’t happen. A good social worker makes all the difference.

      It’s important to change social workers, community nurses, psychiatrists, if they’re causing stress and misery, instead of reducing it.
      All I know is that persistence and actively caring for my child, regardless of whatever system was/is failing us, kept our family bond strong. It’s supposed to be sacred.
      Independence is different and has to be however it suits us.

      • weary mother permalink

        So true.

        But how do family/parents remove workers who are not up to the job,for whatever reason ?
        The team and team manager can gather round an incompetent member. And then all stand aggressively against the family, making the situation much more dangerous for the vulnerable person in their care.

        Organisations can promote people from support role say, into care manager/social worker role, where the person concerned cannot make the step up in competence required. Or team will not permit the capable promoted up unqualified person to make any decisions. Social and Health care work is constipated with professional status needs.

        And, if a worker who is struggling feels they have been complained about, they can become too fearful or obstructive – to pass on critical information to the family.

        If the family has refused direct payments and the LA hires the agency they (LA) can refuse to accept complaints from the family, and or take feedback on incompetent or dangerous behaviour by an agency worker to safeguarding, and pass all back to family.

        Meanwhile safe care and support can fall off a cliff; Vulnerable learning disabled person can deteriorate or worse, and their family become so exhausted in attempts to fix all …that they cannot offer support.

      • I’ve had lots of bad egg support workers, mostly turning up to just sit around and neglect and use facilities they don’t pay for. The good ones have been few, I’m sad to say – the opposite of what you’ve had, I think.
        The worst combination is bad egg social worker plus support workers.

        But persistence and ethical social worker and health staff have brought some hope, although the volume of work for me is still too high. I’m praying for change to start.

    • Weary mother, I couldn’t get rid of social workers not fit for purpose, though I really tried, but I kept up the pressure anyway.
      Also, I’ve had good social workers by accident.
      The bad ones were defended by their team managers, as you say.
      I tried different things, went to various politicians, as complaints often go round in circles, and it was luck and not accepting a bad service I think that finally helped.
      Not a good answer, but I know that insisting on change was the only option for me.

      • weary mother permalink

        FF2016

        I have experienced and done all you describe. It takes years of our lives and all of our energy.

        My son has had many wonderful people support him. And there has been only the rare bad egg support worker..

        But there seems to be something in SW training and or in team/organisational culture that transforms some pre – training people, post their entry into the profession,to see ‘the family’ as a cohort; of dependency fostering enemies.

        Also in this, at worse there is attitude translated into behaviours – of seeing support workers, non professional workers and family as less; less intelligent and less worthy of being seen as peers. All leading to information being seen as a jewel to be shared or retained only within this self allocated professional or managerial status group.

        Leading to the circle you describe of expensive energy expenditure by so many caring, capable, stressed and ill – excluded families..

  6. Lisa permalink

    My child is in their 30’s and still lives at home with us. So far, miraculously, we have avoided an atu. I didnt even know, thank god, they even existed for autistic people, until i found this blog. I sometimes wonder if we avoided this added hell, because my child never went overnight anywhere. No residential school, care, or respite. Now I realise all the calls , which at the time i dreaded, to pick up for being very challenging to say the least, from schools and day opportunities , were actually wonderful, rather that than the atu route.

  7. Pauline Thomas permalink

    Like you Lisa I did not know ATU’s existed either, until I read Mark’s and Sara’s blog. Both their experiences of these places are completely harrowing.

    ATU’s should be just that. Assessment by experienced professionals and then treatment that should not just be about keeping them drugged into compliance. Often the treatment they receive in these units, and the drugs they are prescribed, only disable them even more. both in mind and body. What sort of quality of life is that?

    Guidelines printed in the patients information leaflets supplied by the drug companies may be ignored by the clinicians. Information on withdrawing them safely and the length of duration that the drugs should be given can also be ignored by the prescriber. Lets face it the people being fed these drugs are hardly going complain are they?

    Like you Lisa I am so grateful for the complete understanding and compassion that I receive from most of the people who now help me and my husband look after our son. My son has been angry and disruptive for four years, since the change in his epilepsy medication. He is 45 years old. How parents and carers that have dealt with this sort of behaviour for years and years and are still managing to carry on I do not know. Love I suppose. They are Heroes.

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